Tag Archives: hydrocephalus


Monday was the follow-up consultation from my operation that I had back in December.

I was feeling confident. The signs have been good. I have had fewer what I call "brain fog" episodes, far fewer headaches and just a few migraines rather than one approximately every fortnight.

So, when I got the official news that my cerebrospinal fluid was now flowing correctly and the ventricles in my brain were no longer swollen, it was no real surprise but pleasant all the same. Having the confirmation that the operation was a success meant I briefly got my hopes up that I could go on to have my chiari malformation and syringomyelia treated.

It was but a brief hope.

It seems that the operation I had before Christmas had a better outcome than anticipated. The length of the syrinx in my spinal cord has reduced. It's a small reduction but a reduction all the same.

Previously my neurosurgeon had been fairly adamant that I would need to undergo high-risk, long recovery surgery called posterior fossa decompression. This is not a cure, there is no cure, merely surgery to prevent the condition worsening. For now though, this on hold, with a view for more MRI scans in four months to see if it has improved further. As unlikely as this is, it is a possibility and given how complicated the surgery is combined with it not being needed immediately, it's probably worth doing, no matter how frustrated I feel at the prospect of yet more waiting.

In the meantime, I returned to my GP this morning. I am being weaned off the drug for my headaches and migraines since the original surgery was such a success and have been given amitriptyline to take before bed with a view to help me have a more comfortable night's sleep and ease the pain a little more. I am also succumbing to my body and have decided to order a cane when I next get some money. I worry about what people will think of a young woman with a cane but also think it will be a good thing to have a visual sign of my disability; I know people who walk behind me get frustrated if I am holding them up.

Life seems to have reverted to a state of feeling in limbo once more. Of waiting and hoping and holding on to the positive outcome that I have already had.


The night before my operation, I could not tell you how I felt, such was the mixture of emotions that were going through me.


When it was confirmed to me that on 20th December, I would be having the operation that was first discussed back in January or February time, I was relieved. All of those extra screenings, scans and tests were worth it, I was finally going to have an operation that would see me on the path to (hopefully) fixing my body. On the night of the 19th December, I remained relieved.

I was excited too that maybe, just maybe, this operation would mean I would finally be free of the headaches and migraines that had plagued me since my early teens and the backache since I was pregnant with Harry? Yet I was still conscious of the fact that perhaps nothing will change at all.

A hint of previous vindication returned. No surgeon would undergo a needless operation, never mind neurosurgery, so clearly there really was something wrong with me.

Then the worry kicked in. The worry that I wouldn't wake up from the general anaesthetic. That the surgeon would slip and make a fatal error. Or even if it wasn't a fatal error, one that would mean paralysis or brain damage. Those consequences don't just apply to me, in fact the consequences to me didn't really matter what did matter was how they would affect Harry, that he would grow up without me.

I thought I would be sensible. The husband and I headed to bed at 10 pm, an early night for us since we were being picked up at 7 am for my 7.30 am check in at the hospital. It started well. I fell asleep quite quickly. Yet when I woke up at 2 am needing to go to the toilet (and I never need to go to the toilet during the night) I couldn't get back to sleep. 2 am ended up being the start of a very long day.

As predicted, we had to wake Harry up. Despite the fact he had been on a two-week run of 5.30 am wake ups, of course he chose operation day to try to sleep in and at 6.15 we had to wake him in order to ensure he had some time to eat his breakfast, get washed and dressed.

My Auntie had previously offered to take me to the hospital and have Harry for the day so that the husband could stay with me while I waited to be called to theatre and then see me immediately post-op. I had suggested a time to her a few days previously, via text and she hadn't replied so the husband was starting to worry that she wouldn't come. Just as he suggested I call her to check she was on her way, I received a text to confirm that she had just left her own house.

On the drive to the hospital I bemoaned about my lack of breakfast and in particular, lack of coffee! Whilst I am not usually much of a breakfast person and was pretty sure the wanting food was simply wanting something I couldn't have, being nil-by-mouth, coffee is almost essential to my getting through mornings!

As my Auntie dropped the husband and I off and I said goodbye to her and Harry, I felt a strange sort of peace come over me and I knew that, this time at least, everything would be just fine.

After checking in (I am aware that makes it sound like a hotel stay!) I took a seat next to the husband where we sat and waited. I was then called to see my neurosurgeon, who ran through what would happen, what to expect from the end result, mortality rates and just about everything else. When asked if either us of had any questions, there were none. After being warned that I was last on his last and it was, at best, shortly after 1 pm before I would be called to theatre (and it was still only 8.30 am), the husband and I returned to our seats. And waited. I had bloods taken, just in case of a transfusion being needed then I waited some more. I saw the anaesthetist who explained how the anaesthetic would work and what affects to possibly expect as that was wearing off. Then we waited some more until finally, after what felt like an eternity, I was asked to get changed into a gown.

No sooner had I got changed and sat down, preparing myself to wait some more, I was told that actually, they were ready for me to go straight to theatre. The husband walked with me and the anaesthetist who had come to collect me to the door of theatre, we said goodbye and there it was. After months of waiting, months of tests, it was finally happening and I was about to have my first bit of brain surgery.

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I thought it may be helpful to try to explain the illnesses that I have and the treatments that I am hoping to have.  This is in no way intended to be a "woe is me" as I do know there are many people who are far more ill than myself.  However, I thought I would quite like to use my own, tiny corner of the blogsphere to raise awareness and give some information.

This post has taken some time to put together as I wanted it to be medically correct, rather than simply my own experiences.

Chiari Malformation

This is a fairly rare illness, probably the least well known one that I have and what has caused the other two.

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.

CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)— the clear liquid that surrounds and cushions the brain and spinal cord—to and from the brain.

Chiari picture 2There are several different types of Chiari and I am not entirely sure which one I have.  I was initially told I had Type I because it is the only type where you don't become symptomatic until adolescence or adult-hood, if ever.  My current Neurosurgeon stated in his most recent letter that I have Type II, so I don't know.  Symptoms include dizziness, insomnia, depression, hearing loss, migraines, headaches made worse by coughing, sneezing or straining and balance issues.  I have each of these and have done ever since my early teens, although my hearing loss is from birth.  Whether that is related to Chiari or to my traumatic arrival into this world we don't know and are unlikely to ever know.

There is no cure for Chiari.  The best we can hope for is quite major decompression surgery which involves removing a part of my skull to make more room.  Recovery from this can take anything from a few weeks to several months or even a year or more.  This is not a cure, it is merely to prevent symptoms worsening, possibly ease the current ones and to prevent paralysis.  There is even a risk of paralysis or death in having the surgery.  However, given the rate my symptoms are progressing and the inevitability of ending up in a wheelchair, I feel it is a risk worth taking.  I can hope the surgery will ease my symptoms but this is only a 50/50 chance.


The term hydrocephalus comes from two Greek words.  "Hydro" meaning "water" and "cephalus" which means head.  It used to be referred to as "water on the brain".  My hydrocephalus is thought to have been caused by the Chiari.  This is because that has caused a blockage which prevents the flow of CSF to the spinal cord.  Effectively the vast majority of my CSF is around my brain.  CSF carriesnormal-hydrocephalus-comparison nutrients which are essential for the function of the brain and also carries waste products away from the tissue in the brain.

The brain is usually very good at maintaining the right balance between the CSF that it produces and that which it absorbs.  Hydrocephalus occurs when there is an imbalance between the amount produced and the rate at which the brain absorbs it back.

It is most likely caused by the Chiari which blocks the entrance to my spinal cord.

For hydrocephalus, it is normal to insert a shunt, which drains the fluid away from the brain to another part of the body where it can be re-absorbed.  However, since these are mechanical devices, prone to failure, my own neurosurgeon would like to perform what is called an endoscopic third ventriculostomy (ETV).  Here, he will make a small cut in the base of my third ventricle which should then enable the CSF to flow more freely.  If this doesn't work, I will need a shunt.  All of this is assuming I can have surgery in the first place.  I had my pre-op assessment a number of weeks ago and it has been decided that I need to have a heart scan and see a cardiologist, hopefully I will then get the all clear!


The spinal cord is usually solid, passing down the back, inside the spinal canal.  It connects the brain to the rest of the body, passing signals to and fro, enabling an individual to move his or her limbs at will, to feel objects and to control various bodily functions.  Within the spinal canal, the cord is bathed in CSF.

Syringomyelia is a disorder in which a cyst or cavity forms in the spinal cord.  The fluid from which these cysts or cavities are formed  is similar to CSF.  Over time, syringomyelia can lead to paralysis.  Otherwise it can cause pain, weakness and stiffness in the neck, back and shoulders.  A a person with syringomyelia can also lose the ability to feel extremities of hot and cold, particularly in the hands and feet.

My own cavity is pretty much the entire length of my spinal cord.  As such I have very little protection of my spine and have now been advised against white knuckle theme park rides (which I love!), sky diving (on my Bucket List), bungee jump (also on Bucket List) and trampolining.  My NS advised that even a relatively minor shunt in a car accident could cause a huge amount of whiplash, or worse, to me.

Diagnosis is HARD!

I think part of the reason it is extremely difficult to get diagnosed with these conditions is because the symptoms and the impact they cause varies so much.  Not just from one patient to the next but from one day, week to the next for each patient.  From personal experience, I can be totally fine (well fine for me) one day and will spend that day doing normal activities; chores, the nursery run and a trip to the park.  I may also do dinner that night.  Then the next day it will take all of my energy, teeth gnashing against the pain, to do something as simple as go to the toilet.  Having just one good day, wanting to make the most of that, can then mean I am confined to our room for days on end.  Perhaps I shouldn't push myself so much on the good days but it is hard not to when you want to make the most of those good days.

I hope this has given you just a bit more information and knowledge of this thing that is Chiari.  Most of us Chiarians will have  at least one, if not both, of the other disorders too.

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As you may already know, I have suffered with all sorts of headaches and migraines for as long as I can remember.  As a child I was called a hypochondriac, an attention seeker, despite collapsing once due to the dizziness which often accompanies my headaches.  So it was only in the Summer of 2011 that I finally pushed my GP for a referral for investigations.  At this point I was still employed and so was able to go private and was seen within a week.

Image courtesy of Ambro / FreeDigitalPhotos.net 

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Photograph: Sipa Press/Rex Features

As anyone who has ever dealt with depression knows, there are times when you feel like you're constantly battling the demon.  Times when it is all you can do to get yourself out of bed, never mind anything else.

I am experiencing one of those times right now.

I spent much of yesterday in bed.  Between battling the depression, the hydrocephalus, migraines and other health issues, there are times when I feel like I am never going to be normal.  Although what normal is, I am not quite sure!  A lot of the time, when I am experiencing one of my headaches, whether that is a hydrocephalus one or a full on migraine, it will often cause a relapse in the depression stakes.  Of course that seems to work the other way too so it can feel like a vicious circle.

The thing about this vicious circle is whilst you don't feel like doing anything, even getting dressed, you know deep down that even those simple things will make you feel better.

I am lucky.  I know that there are people suffering far worse fates than me.  I know that.  I have a fantastic support network, a bright bundle of a toddler son, a loving (if sometimes lacking in understanding) husband.

The battling is tiring.  I am fed up of it.  I wanted this year to be the year that I get my depression under control but thus far that doesn't look likely.  I know I have at least another three months on my medication and that's just for the depression.  I've still got to try to battle with a consultant (if I ever get assigned one) to try to fix some of my other health issues.

Battle I will.  Because one way or another I want to, need to get better.  And I have the support I need.  I just need to reach out to them and be honest instead of putting on a brave face as I do.

Do you hide your feelings from those close to you?  How do you know when to be honest and when to keep it in?